dementia

Back in the 1990s when I was a home health/hospice nurse, one of my most memorable patients was a woman I will call “Georgia”.

When I was assigned to Georgia, I was told that she had terminal lung cancer but did not feel well enough to get to her doctor visits and the doctor wanted us to find out what she needed since she did not want to be hospitalized.

I was surprised to find Georgia, her husband and 2 dogs were living in a small camper attached to a pickup truck on the gravel banks of a small river about 50 miles from St. Louis.

Georgia was a dignified and very thin older woman with a look of profound sadness in her eyes. She was getting oxygen for her shortness of breath and effective pain medication but her main complaint was unremitting nausea. Her husband was friendly and anxious to know what he could do to help his wife. Both knew her diagnosis was terminal.

Because of years working with cancer patients, I suggested a new anti-nausea regimen that Georgia’s doctor had never heard about. He checked with a pharmacist and we started the regimen. It worked well.

With her symptoms now under control, Georgia finally spoke about her fears for herself and her husband. I was able to reassure her about measures to make her comfortable and other end of life concerns but she still seemed sad.

I also found out that they moved to the little camper on the river after their home was burned to the ground. That loss was devastating for both of them but they were grateful to be able to rescue many family photos.

Then I asked if she would like to show me some of the rescued pictures and she was delighted.

Each picture had a story and Georgia was happily animated as we went through several of them at each visit. Slowly, a picture emerged of a life well-lived with family and a generous spirit at the heart of everything.

As the weeks went by, I didn’t know if we would get to the end of the pictures as she became weaker and weaker but I saw her spirits steadily improve while the sadness receded.

Georgia died late one night and her husband called to tell me that her death was peaceful for both of them. He thanked me for my help but I felt I should be thanking him and Georgia for the lesson they taught me about the beauty and importance of memories accumulated over a lifetime and remembered with love.

This first of its kind center recreates a town square representing the time period from 1953 to 1961 when most of the patients were in the prime of their life.

The rationale is that dementia makes it hard for people to remember the recent past whereas older memories are preserved better for a longer time, “especially memories from childhood and early adulthood”, according to Professor Dorthe Bertsen who heads the Center on Autobiographical Memory Research in Denmark.

According to one small study done in Europe, most participants showed no improvement on cognitive tests but there seemed to be improvement in their mood and quality of life.

In one section of the article about trying reminiscence therapy at home, Mindy Baker, director of education at George G. Glenner Alzheimer’s Family Centers, suggests going through old photos, doing a favorite activity, and telling stories to trigger memories with the family member.

The goal is to facilitate memories rather than challenging inaccuracies because a person with dementia might get upset if their memories don’t align with the facts.

CONCLUSION

But we don’t necessarily need a fancy facility like the 1950s-inspired day care center to help people with dementia.

Over the years, I have helped care for many patients, friends and family with dementia in their homes, in hospitals or nursing homes. I saw people who hadn’t spoken for a long time light up and join me in singing songs like “You are My Sunshine”.

For my friend Dr. Anne who had dementia, I would tell stories about her achievements and show her articles that she had written and she would grin the rest of our visit.

I learned these techniques when I cared for my mother when she developed terminal cancer and Alzheimer’s in the 1980s and I saw her memory slowly fading away.

Mom finally could not remember my name or my 2 year old daughter’s but she knew we were people she liked. We would all sit together and watch Sesame Street episodes or old movies holding hands and I saw how happy that made my mother even though she could no longer speak.

Most moving to me was that almost to the very end of her life, she was still trying to load the dishwasher and making the sign of the cross. Faith and family were the two things most important to her and this was her way of showing and remembering this.

Memories are so important to all of us and especially at the end of our lives when they may be all we have left.

According to theAlzheimer’s Association , the term “preclinical” refers to “a newly defined stage of the disease reflecting current evidence that changes in the brain may occur years before symptoms affecting memory, thinking or behavior can be detected by affected individuals or their physicians”.

Although biomarkers are still being investigated and validated, this new study can be reassuring to many people worrying that, for example, forgetting where they left their car keys means the beginning of Alzheimer’s.

While the cause of Alzheimer’s is still a mystery, research on the disease is massive and ongoing. Currently, there are drug and non-drug treatmentsthat may help with both thinking and behavior symptoms. There is hope.

THE BAD NEWS

With the many negative stories in major media about Alzheimer’s, it is no wonder that people are so afraid of it.

“Alzheimer’s has been portrayed as the ‘disease of the century’ that is poised to have a near catastrophic impact on the world’s healthcare system as the population ages…

This representation of the disease—along with other often used terms such as ‘living dead’, a ‘funeral that never ends’ and a ‘fate worse than death’—places Alzheimer’s as a soft target in the euthanasia debate because it plays to people’s fears of developing the disease and what it symbolizes. It positions Alzheimer’s as something that requires a remedy; that remedy increasingly being pre-emptive and beneficent euthanasia.” (Emphasis added)

While countries like Belgium and Holland have long allowed lethal injections for people with Alzheimer’s , this is forbidden in the US-for now. However, assisted suicide groups are now trying new “living wills” stating that if or when the person is diagnosed “with Alzheimer’s or another incurable dementing disease”, he or she refuses not only a feeding tube but also even assistance with oral eating and drinking to end their lives.

“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue…. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.” (Emphasis added)

Dr. Schwarz’s advice?

“Complete her organization’s Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.”

But what Dr. Schwarz and others do not want to talk about is the often tragic reality of deliberate death by starvation and dehydration.

Although media articles portray VSED as a gentle, peaceful death, a 2018 Palliative Practice Pointers article in the Journal of the American Geriatric Society titled “Voluntary Stopping Eating and Drinking” states:

“VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers…The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria (painful urination due to concentrated urine NV), progressive disability, delirium, and somnolence.” (Emphasis added)

Most chillingly, the authors state:

“Because an individual with delirium may forget his or her intention and ask for drinks of water, caregivers will struggle with the need to remind the incapacitated individual of his or her own wishes. This possibility should be anticipated and discussed with the individual in advance. While reminding the individual of his or her prior intentions may feel like coercion, acquiescing to requests for water will prolong the dying process for someone who has clearly articulated the desire to hasten death.” (Emphasis added)

The authors also state that if the patient’s suffering becomes severe, “proportionate palliative sedation and admission to inpatient hospice should be considered”. This is not the so-called peaceful death at home within two weeks that people envision with VSED.

Lastly, on the legal requirement of a cause on the death certificate, the authors state:

“the clinician may consider including dehydration secondary to the principle illness that caused the individual’s intractable suffering. Although VSED is a self–willed death(as stopping life support might also be), use of the word “suicide” on death certificates in this context is discouraged because in incorrectly suggests that the decision for VSED stemmed from mental illness rather than intolerable suffering.” (Emphasis added)

So, like assisted suicide, the real cause of death is basically falsified with the rationale that the deliberate stopping of eating and drinking to hasten death is just another legal withdrawal of treatment decision like a feeding tube.

CONCLUSION

Years ago, my mother told me that she never wanted to be a burden on her family.

I never told my children that-especially when they were teenagers and already thought I was a burden to their lifestyles! Instead, I told them that the “circle of life” includes caring for each other at all ages and stages. Such caring also eliminates future guilt and leaves a sense of pride that we did the best we could for each other during our lives.

When my mother developed Alzheimer’s in the late 1980s (and later terminal thyroid cancer), a friend asked if I was going to feed her. At the time, my mother was fully mobile and able to get ice cream out of the freezer and eat it. I was shocked and offended.

“Do you want me to tackle her?!” I asked my friend.

“Oh, no!”, he answered, “I was talking about a feeding tube later on.”

I told him that my mother would die of her disease, not from deliberate starvation and dehydration.

Near the end of her life, we did spoon feed my mother and she enjoyed it very much before dying peacefully in her sleep.

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As so-called “safeguards” for physician-assisted suicide are now starting to be eliminated (See my recent blog “Legal Safeguards, Burdensome Obstacles and Conscience Rights”) , the predicted advance directive (aka “living will”)- already biased against tube feedings-is now on track to include even spoon-feedings.

In an article in Today’s Geriatric Medicine“Judicious Feeding Options at the End of Life” , writer Mike Bassett writes that “In some states, patients can sign directives that allow refusal of feeding when the end of life approaches” and relates the 2013 case of an 82- year-old Alzheimer’s patient whose family filed a lawsuit against a British Columbia nursing home to force the home to stop spoon-feeding her. The lawsuit failed in court but now End of Life Washington , a pro-assisted suicide group, has devised a document called “”My Instructions for Oral Feeding and Drinking”. The document is similar to an advance directive but addresses the signer’s wishes about when to stop oral food and drink in “late-stage” dementia.

Although such a document can be signed, witnessed and notarized, it is not a binding legal document. But this sets the stage for a legal challenge like the British Columbia case but with assisted suicide groups hoping for a different judgment.

The article also interviewed the vice president of constituent services for the Alzheimer’s Association who said that when to stop even oral feeding “should be an important consideration for anyone issuing end-of-life instructions.”

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called “persistent vegetative state” whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer’s disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an op-ed on the Cruzan case titled “Feeding is not Extraordinary Care” and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzandied a long 12 days after her feeding tube was removed, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

However, he noted that:

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

ALZHEIMER’S AND FEEDING TUBES

When I was asked about whether I would feed my mother with Alzheimer’s, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter’s kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother’s case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

ALZHEIMER’S AS A FATE WORSE THAN DEATH

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer’s are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer’s. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by vein or gastric tube when the individual with Alzheimer’s or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a “vegetative” or late Alzheimer’s state. However, Bobby Schindler has written an account of the reality of a prolonged starvation/dehydration death on his sister Terri Schiavo that was hidden from the public.

“JOE’S” CASE

Several years ago, I cared for a man with early stage Alzheimer’s who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer’s was successfully treated recently.

However in Joe’s case, a neurologist was first called to evaluate Joe’s mental status. I was there as the doctor asked him questions like “How many fingers am I holding up?” The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers “fast enough”!

This is the tragic reality when we judge some lives as not worth living.

Like this:

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called “persistent vegetative state” whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer’s disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an op-ed on the Cruzan case titled “Feeding is not Extraordinary Care and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzan died a long 12 days after her feeding tube was removed, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

However, he noted that

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

ALZHEIMER’S AND FEEDING TUBES

When I was asked about whether I would feed my mother with Alzheimer’s, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter’s kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother’s case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

ALZHEIMER’S AS A FATE WORSE THAN DEATH

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer’s are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer’s. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by vein or gastric tube when the individual with Alzheimer’s or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a “vegetative” or late Alzheimer’s state. However, Bobby Schindler has written an account of the reality of a prolonged starvation/dehydration deathon his sister Terri Schiavo that was hidden from the public.

“JOE’S” CASE

Several years ago, I cared for a man with early stage Alzheimer’s who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer’s was successfully treated recently.

However in Joe’s case, a neurologist was first called to evaluate Joe’s mental status. I was there as the doctor asked him questions like “How many fingers am I holding up?” The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers “fast enough”!

This is the tragic reality when we judge some lives as not worth living.

UP CLOSE AND PERSONAL

One of my oldest friends, “Dr. Mary” (not her real name), is a pro-life doctor who asked me years ago to be her power of attorney for health care if she became incapacitated. She had never married and had no close relatives. She told me what she wanted, especially in light of the Nancy Cruzan case, and signed an advance directive available through our archdiocese.

My friend now has presumed Alzheimer’s dementia and she is now in the later stages. She can still feed herself, albeit somewhat messily. She no longer remembers my name or her friends’ names but she is delighted when we come.

At almost 90 and with inevitable death approaching, she now has a Do Not Resuscitate (DNR) order but her nursing home is well aware that this does not mean any reduction in care or attention.

Along with her other friends who visit and help, our goal now is to make Dr. Mary as happy and safe as possible. If she needs spoon-feeding, she will get it. All of us hope that Dr. Mary will never need a feeding tube but she will not be denied one if necessary.

But best of all, Dr. Mary will continue to receive our love until her Lord calls her home.

Futile treatment is treatment that has only a very low chance of achieving meaningful benefit for the patient in terms of:

improving quality of life;

sufficiently prolonging life of acceptable quality; or

bringing benefits that outweigh the burdens of treatment

Alarmingly, the article also states: “Doctors may reach a view that treatment is futile, informed by their definition of futility and clinical indicators such as functional status, disease severity, and age.” (Emphasis added.)

Over 10 years ago, I wrote an article “Futility Policies and the Duty to Die” about little-known futility policies being promoted, even in Catholic hospitals. These policies allow doctors and ethics committees to overrule patients’ or families’ decisions to continue care or treatment when a person’s prognosis or “quality of life” was considered too poor.

However, a couple of weeks ago, a horrified nurse friend showed me two health care directive she recently received as a patient. One was from a Catholic health care facility and the other was a standard Missouri durable power of attorney directive . The wording in both made her question whether such futility policies were now being incorporated into such directives.

“Living wills” and other advance health care directives, invented by so-called “right to die” groups, claimed to give people the power to choose at the end of life

Remembering the prolonged dehydration deaths of Nancy Cruzan and Terri Schiavo, two non-terminally ill but severely brain-injured women said to be in the so-called “persistent vegetative state”, a person might sign a directive but want to prevent such a terrible death for himself or herself.

However, while this Catholic directive has a section to make such a decision, it also an asterisked section attached to both withdrawal and refusal of withdrawal:

I DO NOT AUTHORIZE my Agent/Proxy to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water) as permitted by law.*

*(In a XXXXX health care facility, nutrition and hydration may be withheld or withdrawn if I have an irreversible condition which is end-state or terminal AND if the means of preserving my life have likely risks and burdens which outweigh the expected benefits or are disproportionate without a reasonable hope of benefit.) (Emphasis added)

Using such terms as “end-state or terminal” could, for example, apply not only to a “persistent vegetative state” but also to Alzheimer’s or other dementia. “Artificially supplied” could encompass a simple IV while the asterisked section inexplicably does not even include the words “artificially supplied” before the food and water. Along with using terms like “disproportionate without a reasonable hope of benefit” without stating who makes that determination or what the criteria is for benefit, the average person could be understandably confused in a real life situation.

THE MISSOURI DURABLE POWER OF ATTORNEY DIRECTIVE

Many, if not most, Missouri hospitals have this directive.

This directive has a section stating:

If I am persistently unconscious or there is no reasonable expectation of my recovery from a seriously incapacitating or terminal illnessor condition, I direct that all of the life-prolonging procedures that I have initialed below be withheld or withdrawn. (Emphasis added)

This list includes not only “artificially supplied nutrition and hydration” but also antibiotics, CPR and “all other life-prolonging medical or surgical procedures that are merely intended to keep me alivewithout reasonable hope of improving my condition or curing my illness or injury.” (Emphasis added) Note that, according to the directive, a person need not have a terminal illness or be in a coma to qualify for withdrawal.

The next section can seem reassuring if a person has qualms about a decision to withdraw treatment or care being made too quickly or influenced by age or disability. However, the directive only states that such treatments or care may be tried-at the doctor’s discretion-for an undefined “reasonable”period of time before withdrawal. Unfortunately, this section also includes automatic consent to pain relief, even in dosages that can suppress breathing and appetite as in terminal sedation:

3. However, if my physician believes that any life-prolonging procedure may lead to a recovery significant to me as communicated by me or my Agent to my physician, then I direct my physician to try the treatment for a reasonable period of time. If it does not cause my condition to improve, I direct the treatment to be withdrawn even if it shortens my life. I also direct that I be given medical treatment to relieve pain or to provide comfort, even if such treatment might shorten or suppress my appetite or my breathing, or be habit-forming. (Emphasis added)

The Catholic health directive also includes this section, almost verbatim.

CONCLUSION

With the help of the media, mentally disabling conditions like Alzheimer’s are often portrayed to the public as a fate worse than death and a terrible burden on a family. Tragically, the “right to die” mentality has led many people to conclude that they should die if they develop such conditions or, if dying, that their death may be accelerated to spare their families.

As a nurse who has seen the problems with advance directives firsthand, I helped design my own durable power of attorney advance directive without exemptions or checkoffs that could be misused or misinterpreted. I also educated my husband and family about the medical ethics involved.

As I wrote in my blog Living with “Living Wills”, there are better alternatives available to the standard kinds of advance directives even though no directive is foolproof.

Adequately informed consent is required for legal consent to surgery. Shouldn’t advance directives that involve life or death be held to the same standard before signing?